HEADLINES

Kirklin Clinic Head & Neck Cancer Support Group,  Birmingham, AL

distributed by American Cancer Society

Pat Sanders, Editor

June 2003

 

Speech Options: Myth or Fact?

Most people are impressed by the three ways laryngectomees can learn to speak after they have had   surgery.  These include speech produced using an electro or pneumatic larynx, esophageal production, and tracheoesophageal puncture.  And in reality, these modalities of artificial voice are truly impressive.  They give back the human voice that is so important to daily lives and they offer a link back to society.  For those who have lost their true larynx, these modalities are the tools that give voice and re-create our being and personality.

But with these three modalities and all the various devices and techniques associated with them, how can laryngectomees and family members know which ones are best?  Which ones will offer the clearest voice and the most natural sound? Which ones will be most accepted by spouse, family, friends, and co-workers?  How will I learn and care for the system I use?  What modality will sound the best over the phone and to strangers?  Although this article will not answer these questions, they are ones that face new laryngectomees.  With the assistance of a speech-language pathologist, they often can be answered.

It comes as no surprise that laryngectomees are under the impression that they have options when it comes to the alaryngeal system they will use to communicate.  After all, they have been told that they have "options" and much of the laryngectomee literature refers to the "speech options" that are available to laryngectomees.  In reality, however, many laryngectomees do not have an "option" or "choice" when it comes to the post-surgical voice they will use to communicate.  Take the example of  "Lucy" whose doctor insisted that she learn esophageal speech, the "gold standard."  After earnest attempts and years of frustration, Lucy was unsuccessful in acquiring anything past a pharyngeal squeak.  Now, after 27 years, she still uses a pencil and paper to communicate with family members.  Lucy never leaves the house.  And then there is "Bruno" who underwent several surgeries.  Not only did Bruno have his larynx removed but he also lost two thirds of his tongue.  Even though he purchased an electrolarynx, he was never able to make intelligible speech.  And even though Bruno has a strong, sustained esophageal tone, it is useless for making speech.  Since Bruno never finished school and never learned to read or write, he mouths words and uses gestures to communicate.  Only his son can understand what he is saying.  Finally, meet  "John" who has tried numerous puncture prostheses.  But because of excessive mucus and scarring, he has problems with the prosthesis plugging-up and dislodging.  The device offers voice for a short period and then fails at inopportune times.  After two years, John gave up and permanently removed the prosthesis.  John's esophageal speech is too soft and inaudible and despite his desire to have hands free communication, he is forced to use an electrolarynx.  In each of these scenarios, Lucy, Bruno, and John thought that they had options.  They were wrong.

The misconception that laryngectomees have "speech options" is further perpetuated by those who use a particular technique.  For example, some esophageal speakers are under the impression that anyone can learn good, functional, esophageal speech.  They insist that achieving esophageal speech is a function of choice, motivation, practice, and pursuit.  In fact, a recently published newsletter, The Voice Of Courage (Rosecrans, February 10, 2003) reported "Esophageal speech is easy if you exercise your speech muscles 5 minutes each hour of each day."  Unfortunately, nothing could be further from the truth and this type of writing helps only to solidify a misconception. What about those individuals who do not have the physiological capacity to achieve functional esophageal speech?  There are many variables besides choice that determine whether or not a person can achieve esophageal speech, or any system for that matter.  And realistically, good, functional esophageal speech can be acquired in only about 40% of those who try to achieve it.  What about the other 60 percent?  An individual, who believes that he or she will speak using a given system, and then cannot achieve success, may feel cheated or think of themselves as a failure.  Someone once said that perceptions are real through the eyes of the perceiver.  Because of this, many users may believe that their particular system or device is the best option for everyone. This simply is not true.

In the earlier days of my career, I too used the phrase, "speech options" in an effort to share my knowledge.  Several years ago, however, I learned that my laryngectomee patients and families were better served using the term "Speech Possibilities."  Not only does this phrase minimize the idea that there are choices, but it also sets the stage for a system that is a match with the individual patient.  Depending on a host of variables, the person can be best suited with an alaryngeal system that will work with and not against them.  Until the various systems are considered for candidacy, evaluated, and tried, they are possibilities and not options.

This idea also dovetails with another concept. Clinically, I feel that laryngectomees should have two modalities for speech communication.  Naturally, this is not always achievable but, on a rehabilitative level, it makes good sense to aim for this goal.  Since 99% of laryngectomees can have relatively fast success with an artificial larynx, I set them up with one and begin instruction in their use and care. Then, if tracheoesophageal puncture is concurrently or consequently performed and functional, the patient will have two separate systems for speech communication.  If the patient is a candidate for esophageal speech and is able to achieve success, along with the artificial larynx, there will be two systems available. Or perhaps the patient will simply have two artificial larynx devices; one as a primary device and another as a back up.

The goal of laryngectomee rehabilitation is to bring back the whole person, to completely restore speech communication, and to instruct compensatory strategies.  Whichever speech modality is used, it should be one that is completely functional and one that is a best match between the person, the device, and/or the technique.  I like the phrase, "Speech Possibilities" because it is realistic, truthful, and accurate.

Brian Shute, Ph.D., CCC
Speech-Language Pathologist
Communicative Medical Clinic and Products
bshute@CommunicativeMedical.com
www.CommunicativeMedical.com
Box 8241 Spokane, WA 99203-0241 USA
800 944-6801
509 838-1060


SINUS AND NASAL PROBLEMS AFTER LARYNGECTOMY

By Pat Sanders

After a laryngectomy, air does not pass regularly through the nose as it did when we were using those passages to breathe. Because of this, we eliminate a lot of the contaminants we used to take in through these tender passages and let flow by the sinuses. This can help to greatly lessen the numbers of sinus infections or nasal irritations we have. However, even without an infection, we still can have the stuffy nose feeling and/or the constant runny nose especially during the first few months  after the surgery.  Sometimes sneezing can bring on a spell of a very drippy nose or sometimes a little swelling makes nostrils seem to be stuffed up.

 Some larys have learned a method of “blowing” the nose, although I have not mastered it. So I learned a simple method of nasal irrigation which is a great, easy, way to clean the nasal passages.

 These comments are taken from an article by Reid Goldsborough*:

“The single most effective self-help measure you can take to prevent or treat sinusitis is to wash your sinuses daily with salt water. Sinus washing, commonly called sinus irrigation and medically called sinus lavage (and sometimes called nasal washing or nasal douching), is an age-old practice. Historically, it’s been used more in the East than in Western societies, though this is changing as irrigation is increasingly being recognized by doctors and in medical literature for its health benefits. Some general practitioners and ENTS, however, still have little knowledge of sinus irrigation or regard it as unproven folk medicine, and they don’t mention it to their patients. What irrigating with saline (salt) solution does is help your sinuses do what they’re supposed to do themselves—flush away cold viruses, bacteria, allergens, and fungi. If you have chronic sinusitis, your sinuses have lost some or all of their ability to filter out these invaders. Irrigation is compensation for this.”

 

Let’s start to describe nasal irrigation by talking about what liquid you use for irrigation.  For laryngectomees, we can use the same type saline solution we use for stoma irrigation. Here are some ideas from the WebWhispers Hints section.

From: http://webwhispers.org/pages/hints/stomacare.htm

1. Make your own saline solution by boiling one cup of water and adding 1/8 teaspoon of table salt. Put it in a suitable closed container. If you don't use it within a week, toss it and make a fresh batch. Apply with an eye dropper, syringe or spray. This solution can be used for cleaning the stoma, irrigation of the stoma, and flushing out the nasal passages. Adding 1/8 teaspoon baking soda adjusts the pH balance of the solution. Use it warm and it is good for getting rid of sticky mucus. (Put together from suggestions on the WW list)

2. A saline solution for irrigation is easy to make. To make an isotonic solution (one similar to the salt content of your bodily fluids), mix 1/4-teaspoon salt in an 8-ounce glass of warm water and add a pinch (1/4-tsp.) of baking soda. Discard any unused solution. You may choose to use filtered or distilled water if your water contains a lot of chemicals. Table salt can be used, but many prefer to use non-iodized canning or pickling salt. Using baking soda improves the mucus-solvent properties of the solution. http://allergies.about.com/library/weekly/aa040802a.htm

3. You can purchase sterile saline at your local pharmacy in large bottles to fill your own bottles or sprays. You can find it in small nasal spray bottles or in the contact lens care section of the store. Several manufacturers sell saline in a can for misting and you can purchase saline bullets. All of these things have a sterile saline solution inside different packaging.

If you make your own solution, you can use that mixture after it is cold but it is recommended that you try it warm, not hot.  Hot would burn your tissues, so try for near body temperature.

Trying to keep the nasal tissues moist and healthy is the same as the other problem we have with keeping enough moisture in the stoma and trachea.  Ordinary moisturizing of the body like drinking enough water, using a humidifier, sipping hot drinks, and taking steamy showers will help with keeping the nose comfortable, too, but to wash out the nostrils and help open the sinuses, you need an irrigation tool.  

What do you use for an irrigator?  I use a 10cc syringe without a needle.  It provides as much pressure or as little as I want in order to shoot the solution up into the nostrils (one at a time).  I do this while leaning over the bathroom sink and lifting my head up slightly so it runs right back out the same nostril into the sink and down the drain.  Another product that works well is an ear syringe. Almost any tool we use for irrigation of the stoma or flushing through a  prosthesis can be used for irrigation of the nose. There are pieces of equipment made just for this purpose.  One is a neti pot, which is made to pour the solution in one nostril and out the other and here are several sites where you can see or read about one.  They look similar to a funny shaped teapot or chocolate pot.

http://www.nutraceutic.com/Products/Ayurveda/Neti/thenetipot.htm

http://www.healthandyoga.com/html/clean/nasal.html

http://www.sinucleanse.com/index.htm

 

Another type of irrigator is an attachment to be added to a Water Pic, which they now sell as a total irrigating unit, but you can still buy the wand and put it on your own Water Pic.  You use this over the sink, too, but usually tilt your head to the side so it can more easily go in one nostril and out the other. You can also control where it goes by tilting your head forward.  You can see it here:

http://www.sinus-relief.com/hp.html

 

The Saline nose spray available everywhere will moisturize your nostrils but it is not irrigation. It helps to thin mucus but will not wash it away.  If you use one of these sprays, it is probably wise to be sure you are not having problems because of the preservatives or any extra ingredients. The article quoted above also tells us these preservatives can slow down the functioning of the cilia, compromising the sinuses’ disease-fighting capabilities and it suggests that we be particularly wary of any product for the sinuses that’s preserved with benzalkonium chloride. A number of recent studies have shown that it can damage the cilia and lead to mucosal swelling, the exact opposite of the effect you want.

 

After irrigation, you can massage lightly with downward strokes down the sides of the nose, and across the cheekbones. This may help any time your nose or sinuses feel stuffy.

 

If you use a nasal decongestant spray to reduce the swollen tissues, don’t make this a daily habit or you will have trouble with rebound in which the original problem bounces back, sometimes worse than before.  The spray does shrink and dry up nasal membranes but they also drip down your throat and leave your throat feeling dry. Most of us have enough trouble with dryness already. Anti-histamine sprays should be used only for allergies and sparingly. My own doctor disapproves of anti-histamine nose sprays for laryngectomees since they really dry you up and the pills that everyone pops during allergy seasons are even worse in drying your whole system. The saline spray is safe to use.

 

If you are out in dusty areas, or where there is a lot of pollen, you will have some of those irritants in your nostrils even though you don’t pull them there with inhaling.  It is a good idea to shower, irrigate the stoma and irrigate the nasal passages when you come in.

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Some of the information for this article was researched from these sites:

http://www.allergybuyersclub.com/faqs/faq-sinusitis.shtml

A comprehensive informational article by Reid Goldsborough* covering all aspects of treatment for sinuses.

 http://www.intelihealth.com/IH/ihtIH/WSIHW000/8513/34968/358834.html?d=dmtContent

Nasal Irrigation. Medical Content created by Natural Standard and the Faculty of the Harvard Medical School

 

 

Exercising that Shoulder

Had a chance to talk with a hospital physical therapist who works with a lot of cancer patients and I asked about the problem that so many of us have with the trapezious because of the cutting of the spinal accessory nerve.  He recommended a simple exercise that you can start immediately after surgery.  The shoulder pain and weakness of the muscle can get worse from lack of use and it is difficult if not impossible to force it further than it wants to go. Your weak arm does not want to go straight up over your head.  You need to furnish a little help. Hold a cane (or a golf club or a stick) in front of you with both hands wrapped around it at shoulder level. Start with you hands about 12 inches apart.  Slowly raise it over your head and the stronger arm will help the weaker one to go straight up.

 

I did this a few times and it does work but be careful about doing too much if it has been a while since you have made this move.  I just did it a few times and found later that I reached for something and could feel some light pains in that muscle.  Start slow and work up to more lifts.  Change the position of your hands on the cane from close together to far apart and it changes the stretch. 

(We are planning a full article on stretching exercises soon  PWS).

 

 

 

IAL 2003 in Atlanta

 

REMEMBER THE IAL ANNUAL MEETING AND VOICE INSTITUTE WILL BE IN ATLANTA THE LAST WEEK IN JUNE.  THIS IS THE PLACE TO LEARN MORE ABOUT LARYNGECTOMEES, IMPROVE OUR ABILITIES TO COMMUNICATE AND TO SEE THE NEWEST EQUIPMENT.  WE WILL GREET OLD FRIENDS AND MEET NEW ONES. 

Contact: Email: IAL@larynxlink.com or

Jack Henslee - IAL Executive Director, 8900 Thornton Road, Box 99311, Stockton, CA 95209
Toll Free: (866) IAL-FORU (425-3678), Fax: 209 472-0516.